In April 2018, Anthony Nolan launched a new initiative aimed at improving the way in which post-transplant care is planned and paid for. Why? Because we want to ensure that every patient is guaranteed the care and support they need after a stem cell transplant, for as long as they need it and no matter where they live. We’re now asking for your feedback on our work so far.
What’s the problem?
A stem cell transplant offers a second chance of life to people with blood cancer and other blood disorders. However, recovery can be a long and difficult journey with many physical, emotional and practical challenges along the way. These challenges can occur weeks, months or even years later – every patient is different.
Evidence suggests that there is variation in the care and support that patients receive during their recovery, particularly in England. This is because post-transplant services are not always planned and paid for (or ‘commissioned’) appropriately, which leads to gaps in the services that transplant centres are able to provide. Our September 2017 report, Recovery After Transplant: Who Cares?, covers this issue in more detail.
What is Anthony Nolan doing about it?
Anthony Nolan wants every patient to receive the care and support they need after a stem cell transplant, for as long as they need it and no matter where they live. That’s why, in April 2018, we launched a new initiative to improve the commissioning of post-transplant care.
The first step has been to develop a ‘post-transplant care pathway’, setting out the key services that both adults and children need after a stem cell transplant. This work will eventually form part of a larger report for ‘commissioners’ (the people who plan and pay for NHS services).
How can I get involved?
We are now looking for feedback on our work so far. If you’re a patient, family member or partner, or if you work in the NHS and your role relates in some way to stem cell transplantation, we want to hear from you.
You’re a patient, family member or a partner
We would really appreciate it if you could answer this 15-minute survey to let us know what the best post-transplant care looks like to you. This will help ensure that the pathway properly reflects what patients (and family members and partners) actually want. The deadline is 5pm on Friday 2 November 2018.
You work within the NHS
We would be very grateful if you could provide feedback on our draft pathway – and associated commentary – by answering this 15-minute survey. The deadline is 5pm on Friday 2 November 2018.
Please note that the pathway is a tool to inform discussions with commissioners and not an immediate set of expectations to be placed on transplant centres.
What happens next?
We’ll use the responses to both surveys – and the results of three patient focus groups that we’re running in October 2018 – to inform the next iteration of the pathway and our final report for commissioners. This report will aim to ensure that the needs of patients are fully understood and that transplant centres receive the appropriate support to meet them. We hope to complete this work in March 2019.
We are delighted to be supported by an Expert Steering Group consisting of healthcare professionals, other NHS representatives, and patients. The group is chaired by Dr Fiona Dignan, Consultant Haematologist and Clinical Lead for Haematology at Manchester University NHS Foundation Trust, and vice-chaired by Ruth, one of the group’s patient representatives.
Who can I contact for more information?
If you have any questions or would like more information about this initiative, please contact Amelia Chong, Policy and Public Affairs Manager, on firstname.lastname@example.org or 020 7424 1391.
If you’re a patient (or family member or friend) who is looking for information and support, you can also contact our dedicated Patient Services team on email@example.com or 0303 303 0303.